My Husband’s Story

A lot of you have asked or wondered if my husband Jordan would ever be willing to share aspects of how my Breast cancer affected him and our family. He has always said that he would someday, but feared he wouldn’t be able to put his thoughts into words in the same way that I have. I think it was something he would have gotten to eventually, especially if something happened and I was not doing well, but we got bit of a nudge a few months back when Good Housekeeping contacted me. They were interested in interviewing Jordan and I for a story about young families facing breast cancer. We of course said yes as it has unintentionally become part of my mission to share the side of breast cancer that so many hide, but this was a great opportunity for Jordan to share a bit of his story as well. I will admit he was hesitant at first, and in his words he feared he may “screw it up”. I told him that It was his call, but I did have one stipulation….. If he agreed to the story, he had to be 100% open and honest with the journalist writing the story.

Here is the article that GH published a few weeks back. The writer we worked with did a great job of capturing Jordan’s thoughts and feelings and Jordan joined me by taking one giant step out of his comfort zone, as he was honest and open in discussing a some pretty difficult topics. The truth is he too has suffered and is still suffering through all of this with me, just in different ways. In some ways he is suffering on an even deeper level than I am because he has to helpless watch and react rather than feel things first hand. Breast cancer didn’t just happen to me. Breast cancer happened to everyone who loves me.

We would like to note that the headline is a little deceiving. Jordan did take a lot of the photos that are featured in the article, however Sam from Shutter Sam Photography deserves a great deal of the credit for beautifully capturing so many aspects of the past two years, including all the aspects of this journey that are so difficult for others to see.

See the Good Housekeeping article here:

http://www.goodhousekeeping.com/health/a44239/husband-documents-wifes-cancer-battle/

#MyPersonalPinkTime #GoodHousekeeping #ShutterSamPhotography

 

Post Cancer Treatment Scans

(a MRI scan from the past 6 months. It seems they have found a need to scan my abdomen my wrist, my Brian, and my spine, but not the most important)

As promised, I have addressed the silence and I am opening the door back up. Here is a little glimpse into what has been going on in my world. A few months ago I shared that I had reached the 2 year anniversary of the day I started chemo. Although it was a VERY busy day at work, I was taken back to that pivotal moment in my journey with breast cancer more times than I can count. I was hopeful to be on the other side of things, and very grateful to finally be getting a little bit of my pre-cancer life back. However if you have ever faced cancer you know that it doesn’t take much to rip each and every hopeful thought out of your mind and replace it with doubt, sadness, and fear. Shortly after posting on my cancerversary, I unintentionally ran my fingers across my breast area as I so often do without even giving it a second thought now. After having breast cancer you do not have to put a self breast exam reminder on your calendar as the thought crosses your mind every single day there after. But this time something was different, my fingers came to a screeching halt and stopped quickly at the edge of a lump I hadn’t yet felt. My world stopped. I could feel the heat or fiery burn of an anxiety-induced hot flash rushing up from my legs and arms and filling my body. All of a sudden, my mind started racing  and filled with fear. My very first thought was, my cancer is back, and then the cycle started. Everyone cancer patient faces the reality that their cancer could return at any moment, and move to other parts of the body. In a way, I have actually made peace with what I cannot control and I have whole-heartedly promised that if my cancer does come back, I will again fight with everything I have in me. However that peace is still not preparation for your worst fear unfolding in front of you.
For me, my life has just started to normalize as I am finally back to work, I am just now getting compliments on the hairstyle that I didn’t choose, and have even started wearing my converted head scarfs as neck scarfs again. I have gotten used to being the .1% in that if something can go wrong it typically does with me, but I have stayed hopeful that my treatments worked and my cancer is gone forever. Although my inner optimism was trying to take control, the lump felt hard, it didn’t really move much, and it did not hurt which I know are all symptoms of a malignant breast mass. To make matters worse, the lump was in the exact same location as the very lump I found two years ago. I looked for any rationale I could find for the lump, but my mind was already spiraling out of control. I thought about how awful the treatments were on my body the first time around and worried that I wouldn’t be able to keep up the pace I have been working at in my personal life, with my advocacy, and with my work schedule. I worried about the fact that if my cancer had returned there is an even grater chance that it has moved even further than the lymph nodes and how at this stage oncologists no longer entertain the word cure. In an instant my mind again shifted gears and halted as I realized that I still have not had the breast MRI that my oncologist has been ordering to confirm that my treatments worked in the first place because my insurance is denying me. I again saw the faces of 3 different Radiologists saying “ you really need to get an MRI, because that is the only way we will be able to see the chest wall to confirm that the treatments killed the cancer cells that were left after your bilateral mastectomy”. Did the chemo and the radiation treatments work? Did the fact that my chemotherapy regimen had to be dose reduced by 20% make the treatments ineffective? After all, I was only able to receive 80% of the cancer killing drugs that are known to kill my form of cancer. And the obvious thought of having positive margins after surgery push it over the edge. My greatest fears were already coming to life in my mind. The dose-reduced chemotherapy regimen was no match for the cancer that was left after my Mastectomy and it really had been growing in my body ever since. Have I really been walking around with cancer in my body all this time? My heart was racing and my mind was spinning out of control. I thought about the conversation that I had with my nurse a few weeks back in sharing a dream that I had where I realized that the people who make the biggest difference in the world, do so because they ultimately die trying. I remember the goosebumps running up my neck when I actually muttered the words, “Seay, what if I am meant to bring my cause to the forefront of people’s minds, but I am meant to loose my life in the process to serve as an example. I remembered that I told her I was at peace with what I could not control and I have already committed myself to a cause that choose me but, and at the same time I am not ready. I will never be ready. Before I knew it all I could focus on was the words that John and Cindy, two friends who were taken by cancer, said to me in their final days…. “I am not ready to die, there is still so much more I want to see and do”. That thought. That truth. That has been my biggest and greatest fear since I heard the dreadful words. Having no choice in the matter and knowing that you will be taken is a terrible thought.  Accepting that my greatest fear could someday become my reality has been the hardest aspect of healing through breast cancer.

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Addressing The Silence And Moving Forward

Would you believe me if I told you that before cancer, I used to be the shyest most reserved person you had ever met, and I would have done anything to avoid talking about my own feelings, personal thoughts, or struggles?

2 years ago, Cancer was NOT even on my radar. In fact, Cancer was something that I thought happened to other people, not something that I thought would ever happen to me… Until it did.

As many of you know I found the lump myself, but not because I was doing a self breast exam. I found it because I had been experiencing really sharp shooting pains in my chest pains for at least 6 months. When the pain was bad I would push the palm of my hand up against my chest. That’s how I found the lump. I didn’t tell anyone about it for a few weeks, but my mind was filling with fear and all I could think about was the fact that cancer could take me from my family. After doing a lot of research I realized that I had to tell my husband….. and I had to make the call. I saw my OBGYN first. She said that based on my age alone most doctors would recommend watching it for 6 months, but she said she wasn’t going to take any chances with me because she had a family history of breast cancer. She sent me for a mammogram, an ultrasound and Biopsy right away to rule out cancer. After two mammograms, I was sent to have an ultrasound. My technician was about midway through the scan when she said she had to talk to the radiologist. She tried desperately to make it seem like a routine part of the process, but I was starting to see realize what was happening. She was gone for at least 20 minutes so I had a lot of time to let my mind wander but I was oddly no longer thinking all the scary cancer thoughts, instead my mind was racing with moments from my life that made me feel like that exact moment was all part of a bigger plan for me.

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False Expectations and Survivorship

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One year ago today I finished my radiation treatments.
For 9 months I had been counting down to this very day, the day that I would walk out of Lemmon Holton Cancer Pavilion knowing my hardest treatments were complete and my cancer was behind me. I thought this day was going bring a since of accomplishment, joy and relief, but boy did I have another thing coming.

One year ago today may have marked the end of my intense chemo and radiation treatments, however it also marked the first day of my survivorship or what I like to call my “now what” phase. Which just happens to be longest and by far the hardest phase of my cancer journey. I walked out those doors feeling anxious, fearful, and worried and all of a sudden the weight of the world was on was again on my shoulders, but now in ways that I had never felt before. For 9 months I knew exactly what I had to do to fight my cancer. I saw my oncologist every 3 weeks, my Chemo Nurse, and my Oncology Nurse practitioner regularly, and I saw my infusion nurse nearly everyday. I was being monitored very closely and if anything came up, it was addressed on the spot. As my Oncologist hugged me and said I’ll see you in 3 months, I put on my best smile, but it was hard to fight back the tears that were filling my eyes. There were no tests, no scans, nothing to confirm that the treatments had worked, nothing to assure me that the positive cancer margin that I had left after my bilateral mastectomy were now gone, and nothing to comfort this fear. We were just trusting the science behind chemo and radiation therapy alone and hoping for the best. At this point both my oncologist and my oncology nurse told me that I needed to pay very very close attention to my body and call them right away if anything new was happening because they would get me in, in a moments notice. They said I needed to become the hypochondriac that they were trying so hard to help me become over the course of my treatments, but now I couldn’t help but feel it was all on me. What if I missed something? What if I misinterpreted a sign or most importantly what if there were no signs at all? My mind was racing with fears and concerns. Did my treatments work, did the fact that they deceased my recommended chemo regimen by 25% (because my body couldn’t handle it) decrease the effectiveness of my treatments, what if going through IVF and putting a very high dose of hormones back into my body was a bad idea, was I ever going to feel like me again? As my mind filled with fear and doubt, my anxiety was going through the roof and an internal battle began in my mind. After all I was supposed to be happy, I was supposed to feel better, I was supposed to be putting the bad, the hard, and the scary behind me and I was above all, I was supposed to be getting my life back. In the beginning you are prepared for everything that is about to happen to you and you are told, it is going to be a hard year, but you assume things will get better when that “bad year” comes to a close and the worst of it is over. Unfortunately despite what those on the outside think, this is not what happens as a cancer patient finishes treatments.

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Initially it seems like a lot of physical work, or it did for me. My body was and is just plain beaten down after chemo/radiation treatments and surgeries. I didn’t have the energy to do anything and even walking across the room made me faint, weak, and winded. I struggled and still struggle to lift my left arm above my head because of auxiliary web cording from my mastectomy surgery, and to top it off I was now starting a 10-15 year hormone therapy regime that would cause severe and debilitating bone and joint pain, as well as osteopenia, which is the early on-set of Osteoporosis; when your bones begin to deteriorate because your body is being stripped of all hormones. I was now facing another year of surgeries including several reconstructive surgeries and the surgery that would forever take my ability to bare the second child I was planning for  before my life was turned upside down. The after effects of being medically forced into menopause were also starting to become more then I expected them to be. The headaches, the night sweats, the hot flashes, the pain, and the biggest challenge of losing all closeness and intimacy with my husband at the age of 33 bothered me more and more every day. That’s when it hit me. Nothing about me was the same and it never would be again, despite what everyone around me thought. When I stood in front of the Mirror I did not see Tammy, or even any glimmer of the Tammy I had always been. Rather, I saw someone who had been broken, someone frail, defeated, and most of all someone full of pain, sadness, and fear. It wasn’t just what happened externally in loosing all of the body parts that made me feel like a women and filling my once young looking body with scars because that part I had excepted, or even the weight gain or loss of elasticity in my skin due to the medically induced menopause that were the biggest changes; the biggest changes happened within me and that is something you can only see by looking beyond my smile. I could no longer relate to normal daily conversations with family and friends because cancer became my everything. I could no longer think about the future with delight and anticipation because instead I wondered if I would even be here to see the milestones that my daughter would achieve. I really had lost the ability have fun, the ability to just be “me”, or even the ability to just live life. But the hardest part still to this day, is knowing that the awful “c” word would always be lurking in my world. That no matter what do, no matter how I eat, and no matter how I live, my cancer could always come back and take me from my family.

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If dealing with all of this isn’t enough, I had to add on the hardest aspect of all. I now had to figure out how to navigate through all of this and still put on a smile on my face because to the outside world I was expected to feel better, to be happy, and to be me again. I was supposed to be picking up the pieces of my former life and moving forward with a me that I didn’t know yet. Everywhere I went, I heard “oh my gosh you look so great”. “You must be feeling so much better now that your treatments are done”. Every time I heard this, I couldn’t help but be reminded of how wrong that statement was, I couldn’t help but think of how much cancer has taken from me, and how much it is still impacting my life and my mind.

Over the past year I have began to work through all of this, but it has not been an easy process and I cannot say that this process or this work will ever be complete as it too seems to be a very long journey in itself. I would say that my relationships have changed in both good ways and not so good ways. I do feel that in some ways cancer has brought me closer to some and even strengthened some bonds, however I am realizing that I am somewhat withdrawn from even those who used to be closest to me, because what I am going through mentally and emotionally post cancer is something that someone who hasn’t been through cancer themselves could never understand, which creates a certain level of isolation in itself. Every pain, cough, or change in my blood work triggers a fear that my cancer is back and every time I look back on photos from the past year and a half I am reminded of the time that I was not able to be the mommy I wanted to be for Corryn. I do my best to then remind myself that I was doing what I had to do, to ensure I will be here to see her grow into a beautiful women, but the truth is my cancer could still come back. I received a comment that drives home what we young cancer patients already know to be true. When you are diagnosed with breast cancer under the age of 40, your cancer is different then if you are diagnosed over the age of 55. It is stronger, more aggressive, faster growing, and it is far more likely to return and metastasize in our bodies. A women commented on my page by saying that she was in a group of young cancer patients 12 years ago and not one of those young women are alive today. This thought haunts me and sadly it always will.

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But on the positive side, I have also learned more about myself over the past year, then I have over my entire lifetime and I truly do believe that I didn’t become the person I was meant to be, until cancer brought me to my knees. With all of the sadness, fear, and anxiety I am learning to accept and even embrace the new me and most of the time, I even  like the new me better. I have always been a very optimistic and positive minded person and I have tried to approach my new life with cancer in the same way. With each day, I make a little more progress, and I am learning that even on the days that take me a few steps backwards, there is always something that can be learned from those steps. For me, it took letting go of what I cannot control and accepting that my cancer could return and take me from my family, before I could actually put that fear aside long enough to live in the moment again and actually smile from my soul. There are still days that this fear does consume me, but on those days I try to listen to my dear friend Vicki and have compassion for myself, and most of all, I try to allow myself to feel what I am feeling for as long as I need, and then I dust myself off and put my game face back on. Looking back I am still not sure I would take any of my cancer journey back, because of all of the life lessons and self-growth it has brought my way, however, if I could make those who don’t love or appreciate their own lives, see just how lucky they are or even just take away some of the fears that lurk in my own mind I would jump at the chance. With that being said, if I could offer any bit of advice to someone in my shoes; it would be to keep your heart and your mind open through your entire journey. Don’t fixate on getting the life you had back, but rather open yourself up to seeing the life you were meant to lead. Don’t worry about the day you will be taken, but rather try to live in the moment today. And above all if your new life with cancer has you feeling sad, fearful, or anxious in ways that others around you could never understand, give yourself that day to feel it. You… We have earned those days, and we need those days in order to get back to the good days. If I could offer any words of advice to a spouse or caretaker or even a friend on the outside, I would tell you to remember that just because we cancer warriors are starting to look healthy on the outside with budding hair and eyebrows it doesn’t mean that we are even a little bit ok on the inside or even that we are “better” at all. Cancer is not something you get through and move on from. It is something that we did not choose but happened anyway, and worst of all it is something that will linger over us causing fear of the unknown, long-term pain, and even some level of sadness and loss for the rest of our lives.

#mypersonalpinktime #oneyearpastradiationmilestone #cancersucks

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Sign My Petition

Breast Cancer Happens Under 50:
Help Me Fight For Early Detection In Younger Women

Forgotten Fighters | Tammy Myers from Tammy Myers on Vimeo. Click here to sign the petition.

It’s official. The Forgotten Fighters campaign is live. Please take a moment to watch the video, sigh the petition and share this link with everyone you know.

Breast Cancer Happens under the age of 50. In fact women in their 20’s and 30’s are being diagnosed with breast cancer every day. The harsh reality is that Breast cancer is not limited to those who have a family history, high body weight, lower activity level, consume more alcohol, or smoke. It can attack any woman, young or old, at any age. This overlooked group—younger women in their 20’s and 30’s—are typically diagnosed with much more aggressive and further advanced forms of breast cancer. It is astonishing that the U.S. Government does not recommend screening young women. Even more, it suggests that younger woman should not even preform self-breast exams. This entirely contradicts the long-held suggestion that early detection saves lives.

If it’s large enough to be felt, it already may be too late When a tumor is found during an annual screening—mammogram or ultrasound—it’s often caught long before it has grown to a size that can be felt. Unfortunately, women under the age of 50, especially those under 40, must rely on themselves to find a lump. We must show the U.S. Preventative Services Task Force that although we may be the smallest categories of women diagnosed with breast cancer, we still represent lives that could be saved. In the absence of Government-guided support, young women need to be our own breast advocates. We need to forget about the guidelines and get to know our bodies, check ourselves often, and push our medical team to do the same.

Please join us in the fight to change the recommendation to a much earlier age and give younger women a fighting chance against breast cancer. Don’t just do it for us, do it for all the daughters, mothers, and wife’s who will be diagnosed.

Please take a few moments to watch the video below, like the forgotten fighters Facebook page, sign the petition, and of course help me make this grassroots campaign go viral, by passing this message along to everyone you know.
A very special thanks to Rhino media, Shutter Sam Photography, I do Signs, White dress events, Modern Day Floral, Sip Organic Juice Bar, Adrienne and Meghan from Pure Salon, Anything Goes Catering, The Cakabakery, The Event Loft, Hourborfront Banquet Hall, Wasserman’s flowers, White Dress Events, Grand Finale Desserts and Pastries, and to Ron Kellow who helped me string all of this content together. I am so thankful that you trusted in my crazy ideas, and jumped on board to donate time and services, to help me turn my crazy little vision into a reality. I truly could not have done any of this without all of you.

Now let’s make some waves! Click here to sign the petition.

In order to truly make waves we must show support with signatures.

You can also check out the webpage at forgottenfighters.org

#Forgottenfighers #Mypersonalpinktimeprojects #reversetherecommendation

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Lung Scan Results Are In

Screen Shot 2016-07-30 at 1.28.53 AMGood News….Lung Scan Results are in:
The results show that the nodule on my lung is stable and it looks to be benign which is the very best news! No more cancer. Big sigh of relief there!

On the bummer side, the test also reviled that I do have a small hole in my lung causing pneumothorax, which explains my shortness of breath. My oncologist wants me to go to the emergency room where they would either insert a chest tube or needle into the lung to help it re-inflate it, if it gets worse this weekend, or if I’m ok the way it is, she wants me to come in Monday for a chest x-Ray to see if it will eventually correct itself or if we need to fix it. A bummer of course, but it’s treatable, and it means that the shortness of breath is not a lasting or long-term side effect from the chemo. This I am very thankful for. 😀

#mypersonalpinktime

Taking the Bad with the Good

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Taking the Good With the Bad:
Last week was full of high moments for me as I experienced my first National Cancer Survivor Week. To start off my week, The Susan G. Komen Organization shared my story on their home page and with a survivor day campaign that they are running to bring hope and comfort to women enduring breast cancer treatment with notes of encouragement. On Tuesday, I saw my oncologist for my 3 month check up and she not only raved about my reconstruction progress, but also said that there was no sign of any cancer return in my breasts and later that day Spectrum Health Beat posted a story about my journey with breast cancer and the vital part that my medical team played in the last 15 months of treatments and surgeries. On Wednesday I wasn’t feeling great so I spent the better part of the day at infusion, but during that time, I was asked to do my first ever radio interview, which was a little intimidating at first. Following the interview and my infusions, I headed down stairs to check out the Spectrum Health Cancer Center’s Cancer Survivor day celebration at Lemmon Holton where I met some pretty special people. One being a very sweet young lady. I was sitting with a friend when she came up and said “Tammy?”. Her eyes instantly welled up with tears before she could get another word out. She said she has been following me for the past year and that she has followed many cancer stories over the years and none have touched her in the way that my story has, which was so touching to hear. She said I usually never do this, but I saw you and I had to come up and tell you how amazing you are and how much you have inspired me. I asked her if she had been personally touched by cancer and she struggled to hold back the tears as she said, “I lost my aunt to breast cancer when I was younger. She was everything to me and I am now living my life in a way that honors her.” I got goose bumps all over my body, but in a good way, as I too lost my aunt at a very young age to breast cancer, and I too made a promise to live my life in a way that honored her. Although we didn’t chat for too long, she left a little imprint on my day and on my heart. I ended my week by finally releasing a sneak peek video teaser of the Breast cancer awareness project that has been in the works since the day I was diagnosed,which was a release of emotion in itself. I still have a lot of work yet to do, but I am very excited to release the full project into the public very soon.

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All of this sounds really great, but there is one moment among all these happy and joyous moments that I haven’t shared. Before I left my 3 month oncology appointment with Dr. Melnik, she mentioned that my post treatment and surgery nausea may be because of some gall stones that have shown up on my scans, so she suggested I see a surgeon about potentially having my gall bladder removed, and then… She let me know that they had found a nodule on my lung in a previous scan. Right away, she said that it could be nothing, but she also said that they have to take anything in the lungs very seriously because it is not uncommon for breast cancer to move to the lungs, which is not what I wanted to hear. She said we have to do another scan to take a closer look and makes sure that this nodule is not more cancer. As usual my heart skipped a beat, but I have had many scares already in this journey so I am getting better at putting my fear aside and letting the positive guide me through. Although it is always scary to hear you have to be re-scanned for anything, I was able to kind of dismiss it and tell myself it was nothing. However seeing my husbands eyes well up with tears and his mind fill with fear again, as I shared this with him, reminded me how serious this situation is and always will be. Just seeing the fear on his face took me back to those scary first few days last year. The truth is, having even a small chance that there could be more cancer growing in my body and knowing that I could be faced with all of this again, has a way of sending your mind into panic mode.

I will be honest, I originally didn’t think this was something I was going to share because this key part of my post doesn’t exactly go with all the good that cancer survivor week had brought last week, but I am realizing that this key part has a bigger part in this whole message all together. To be completely honest I am not a huge fan of the word “survivor” or at least I wasn’t. I kind of felt that if my medical team could tell me that I will never have to deal with cancer again and that cancer was just a part of my past and will never be a part of my future, then I could refer to myself as a cancer survivor, however we don’t know if that is the case. I started my battle with cancer last year, I battled my way through treatment, I battled my way though surgeries, and now I am battling my way through post treatment care, and the lasting effects of breast cancer. My fight started last year and it will not end until the day I take my last breath (which will hopefully be many many years down the road), so I prefer to call myself a “Cancer Warrior”. I’m not sure if my battle will ever be won because from what I understand you don’t really ever fully win a battle with breast cancer… Although it has a high cure rate as they say, it also has the ability to lay dormant in other parts of the bod for years until it rears its ugly head again, so it will always be lurking in my mind, and I feel like I will always be fighting. In explaining this to my infusion nurse, she said, why is it that you don’t like to attach the word survivor to you? How does it make you feel? She does that sometimes… just puts you on the spot and makes you face and work through your reality but she did kind of see my point. However it must have been on her mind, because she returned to my little infusion cubicle a little later to tell me that she looked it up and the term “Survivor” is actually derived from the Latin term “la Vevere” which means “to live or living”. The dots immediately connected in my mind. Although Cancer will always be a part of me and I will constantly be reminded that my “cancer” could return, I don’t have to let it own me in the mean time. That’s when it clicked that I needed to share this part of my week with all of you because dealing with constant fearful moments like these and still getting up each morning and putting a smile on my face for the ones I love is what truly makes me a survivor. I do have some control here.. I can wake up every morning and choose to live and not let cancer control me in this very moment. Even with the scares that seem to keep coming at every pass, I can take the good with the bad, and I can choose to be a survivor. I can choose not to let cancer win and keep me down and that is a choice I am going to keep making. So I am a “cancer warrior” who will not give up, but at the same time I am also a survivor who chooses to live. In the mean time, I am going to hope and pray that this scare with my lung, is just that… a scare.

Although the fear that comes with a cancer diagnosis will never get easier, I am accepting that this is a part of my life now and I am choosing to remain optimistic. In talking to both my nurse and my OT today, there really is a greater chance that this scare is nothing to worry about, but none of us will be able to move forward until we know that for sure. For now an order has been placed for another scan to take a closer look at my lungs and I will be seeing a surgeon about my gall bladder in the coming weeks. As usual I will keep you all posted.

‪#‎cancersucks‬ ‪#‎mypersonalpinktime‬

National Cancer Survivor’s Day

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15 months ago now I was initiated into a very elite group that I have never aspired to be a member of, but I proudly join all cancer survivors on this National Cancer Survivor’s Day, by honoring those who have lost their battle, by encouraging those who are still fighting, and by celebrating those who are wining their battles with the awful “C”.

I was honored to have Spectrum Health Beat write a story on my journey with breast cancer and the oncologist who has guided me through this cancer jungle.

Sharing and Teaching Round 2

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When my Occupational Therapist asked me to let her do a live demonstration or therapy session on my cording during a presentation on Post Mastectomy Cording and Lymphedema that she was giving the GVSU graduating OT students this past December, I really didn’t know what to expect…  or should I say; I didn’t make time to over-think what was about to happen as I often do. Instead, I kept my promise to allow this journey with breast cancer, to take me where I was meant to go and I accepted the invitation to share some of the real struggles that come from breast cancer with young students who will indeed be in the position to help women like me in the future. Although I walked into the lecture hall not knowing what to expect, I was completely in the moment and did exactly what felt right. I shared not only a bit of my story, and the struggles I am still facing post mastectomy/reconstructive surgeries, but I also bared all and showed my real lasting breast cancer battle scars and a glimpse into some of the drastic physical effects of breast cancer and how that impacts or  limits aspects of your everyday life after breast cancer. I know I have said this many times before, but before my diagnosis I would have never shared these details with even my closest friends let alone a group of students I have never meant, but this year has opened me up in ways that I cannot explain. My own personal insecurities now fall second to my passion to make a difference and turn my crazy year into some type of positive. So far, following my my gut impulse and most importantly following my heart in the moment, has not let me down this year and this day was no different. Every student in the room had compassion, was engaged, and most of all every student was there in the moment with me. I was at ease, and I felt safe, but most of all, I felt like in that exact moment, I had the ability to give each and every student a real look at what a young woman with breast cancer really face, even the things that nobody really ever talks about, and I had the ability to help my amazing occupational therapist Amy teach these students first hand, so that one day when a woman dealing with all the physical struggles that come from breast cancer is sitting in their office, they will be able to better help them with a better understanding of their struggles. Although both my husband and I were both shocked at how much I actually shared, there was no regret. I walked out of that classroom feeling grateful that Amy asked me to be a part of her presentation, but also feeling like being there that day, was in a way fulfilling one of the purposes that has been laid before me.

_DSC3485 copy_1140That purpose got a little greater, a month or so back. A few occupational therapy students from SVSU in Saginaw, MI happened to see Grand Valley’s post about the presentation that Amy and I give on Facebook and they contacted me right away to see if both Amy and I would be willing to do a very similar presentation for their class as well. Originally they wanted us to be a part of a conference that involved, professionals, students, faculty, patients, and caregivers, however the dates just didn’t align on our end so we ended up doing a presentation one a Friday afternoon after their classes had let out. This time around, I knew what to expect, I knew that I would be talking and sharing with these students and I knew that there was a pretty great potential that I would again open myself up and bare my scars…. So I took the time to over-think it and I was nervous, but talking with my occupational therapist on the 2 hour drive to Saginaw helped so much. To our surprise there was no professor or instructor present that Friday, and no one was requiring that these students  were present for our presentation. In fact, they  arranged this lecture on their own time, because they wanted to be there, they wanted to meet the two of us, and most importantly they wanted to learn from us.

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Realizing that, put my mind at ease right away. As I sat on the table and listened to Amy give her breast cancer background and her post mastectomy cording intro, I realized that again I was right where I was meant to be. My OT Amy, is quite amazing herself and also happens to be a young, two-time breast cancer survivor herself, so she comes with expertise from both a professional and a personal level. She explained what happens to a woman’s body during and after breast cancer, and breast surgery, and she talked about the struggles that we breast cancer warriors face every single day.  Each and every student was hanging on every single word. I found myself taking in all that she was saying and in a sense educating myself  “on the other side of my breast care”. That was until she got the the part where she explained that typically, post mastectomy cording takes about 4-6 weeks to break up, and that it usually gets better, but that I was her  special case, because my cording is very pesky and complicated in that it keeps returning with a vengeance thus proving that I am again that .01% that broke the mold. Oddly this surprised me. Amy then worked my cording in front of the class to show how she stretches, pulls, and even tries to break the cords that restrict the movement in my shoulder and arm. Let’s just say she didn’t hold back, so it was at times hard to hide the pain. OK it was quite obvious that it was painful….  but I did my best to smile through it. When it came time for me to share the real battle scares, the nerves had settled and it just felt right. Honestly if felt very much like an intimate conversation with a somewhat large group of people, if that is at all possible. The students were again, quite respectful, engaged, and almost captivated at what both Amy and I had to say, which meant we again walked out with no regrets. I feel so honored that I was able to be a part of Amy’s presentation and again I feel very honored that I was able give the students from SVSU a first hand look at what one of their future patients might be facing.
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#sharingandteaching #mypersonalpinktime #SVSUotprogram

Pain and Worry

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It has been a pretty rough few days physically, painfully and emotionally, and to be honest after feeling nauseous and struggling to eat or drink for the past few days post surgery, I am very weak, vomiting and constantly on the verge of passing out. It was a struggle because although I knew I needed to be seen, and I knew I really needed some fluids to get me back to a good place, I didn’t really know which, out of all of my specialists was best to call. Do I call my oncologist who has treated every condition for the past year, my cardiologist who knows of my cardio conditions but is unaware of how cancer exasperates them, do I call the surgeon who saw me last a few days ago in the hospital or do I call my general family practice doc?

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